Wednesday, November 25, 2015

Today marks 4 years since Ella left this world. People often ask what the month of November looks like and feels like for us now, I thought I would share...

Every November 2nd, on her birthday, we go through "Ella's box." Inside her little box we keep a few pieces of her clothes, some hats, pictures, notes I took before our meeting with Crouse, her stack of "Welcome Baby" cards and a few personal sympathy cards. I also keep the yearly birthday cards sent by my friend Christel whom I started our REAL LOVE sewing group with. The fact that we add to her box every year makes me very happy. This year we ate some pie while the girls shared what they remembered after touching her items for the first and last times this year. The memories we keep of her are fond and full of joy.

We recently updated the pictures on our walls and I let the girls each pick out a picture of Ella to frame. We keep a little area dedicated to her.

It's hard to believe Ella would have been 4 and that she has a little sister and brother now, we will always think of her as our baby. Drew and I saw a lot of her in Jorian when he was a newborn, especially around his eyes. Alida can identify her in pictures and talks about her like she's just one of the gals, and it won't be long before our niece Ellie learns about her. Keeping her memory alive has been easy, we continue to learn more about ourselves and the Lord as we cling to what is pure and holy. Without Him we would not be here, let our testimony be for His glory.

Thursday, January 29, 2015

"Starving a disabled child to death can now be called comfort care. Medically prescribed overdose can be called hospice. Heartbreaking suicide can be labeled death with dignity. There used to be a time when those who were weak, sick, and without hope were given help not offered death."

This is an excellent article about the truth about today's medical mentality towards special needs babies. It is so hard to believe that these things really happen today, everyday, in America, in 2015. It wasn't until I got to the quote above that my mind went right back to that place in time...watching our daughter lose weight and grow weak because she was forbidden to be fed, asking us over and over again to "just walk away" like it was such an obvious "solution to the problem." And then the memory of the amount of morphine hospice gave us to give to her at any time to "put her out of misery"....really? a newborn should be given an adult dose of morphine? No thank you. If this is the state and mentality of our medical system then I'll gladly continue to tip my hat and proceed in the other direction.

Sunday, November 23, 2014

Today marks 3 years since we said goodbye to our Ella. We can hardly believe it! So much has happened, so many wonderful people have come into our lives, so many lives have been changed by her story. Since I last posted Ella had a cousin named after her, my sister had a daughter and named her Ellie. She has brought our girls so much joy. Ella will also be a big sister for the second time in a few months, we praise God for where we are today. We have been sewing diapers, fragile baby wraps and burial gowns for stillborn babies right along. A couple months ago we had a new member join our sewing team named Ashley and at our last session she mentioned how she takes home videos and pictures and puts them to song. I went home and thought I should have her do one for us of Ella. Turns out it came just in time for the 3rd anniversary of her parting this world. We have been watching the video repeatedly in the last couple days, Ivy says she needs to watch it 10 times a day, Alida points and says Ellie? and Nadia cries when it's on. I told Nadia that it's ok to cry and be sad and that Ella was a gift to us and because of her we have a lot of gifts. I said we wouldn't have Alida if it wasn't for Ella, our baby cousin wouldn't have been named Ellie and we probably wouldn't be having a new baby in a couple months, at the time we were set on Ella being our last. Little did we know our lives and hearts were about to be turned upside down!

Friday, June 13, 2014

After many rounds of phone tag I was able to talk to Nancy Williams on the phone yesterday. She is the Director of Patient and Guest Relations at Crouse, super warm and friendly lady. She told me all about the things they have been doing, including the new and some changes to the old. Nancy explained that much of their focus has been on communication and support in the Women and Children's department, with our story at the foundation. In doing this they have brought together a Home Management Team of over 200 people. This group of people range from every area in the hospital from Home Services to Chemical Dependence. Upon starting this Team they brought this large group of people together and shared our story and how and why they wanted to implement changes. She stated that many of these people feel very connected to us and Ella through our story, a bittersweet thought. They now have a Neonatal Educator in place to work directly with families who come to Crouse unexpectedly, hence they are usually very unsettled, stressed and vulnerable. This area is still in the works, but on this team they also have a Clinical Supervisor who's job is to reach the families' needs through working one on one with them and the care providers to make sure everyone is on the same page. They have also established a Focus Group for people to bring their unheard stories, both positive and negative, forward to the staff. She said that in this group they have found some of the problems overlapped with our story. Currently in the works is a Support Group for all the families who are there, to bring them together and talk about how their needs can be met through hospital support. Through these groups they hope to improve patient experiences, continue to support their families and enhance the services that already serve in meeting families' needs.Another new application is binders. Crouse is encouraging and supplying families with binders for families to keep journals and logs with their experiences and questions. They also provide the families with information that pertains to their situation and they ask the families to write down any questions that come up at any time so they are not forgotten in the few short minutes they get during Dr.'s rounds. Unlike when we were there, they now allow and strongly encourage the family to be at the bedside during the Dr.'s rounds to make sure everyone is on the same page. Naturally, while I was on the phone my children were wild and crazy, so Nancy knows how busy our lives are, but she encouraged me to take the time to come in and see for myself what the changes look like in action. She asked if Drew and I would be willing to come in and share more of our experiences with these committees and overhear/oversee anything that they are implementing. Nancy said she would leave that door open so that at any time we could take her up on that offer. One of the last points she wanted to make was that some people go into Crouse with an expected outcome, some go in unexpectedly and wait and see how things go, and others like ourselves, go in with a plan. Unfortunately for us, no one listened to our plan and it should have been heard as we were the parents. Above all, they want their new mission to be focused on listening and communicating with the parents. Over and over again she was looking for the right words to explain how much our experience has changed the way Crouse does things. She kept using the words "just seemed right" and "the timing seemed so perfect" and the letter had all "the right words." She must think we are motivational speakers or have a gift/desire to speak to a group of people whom we do not see eye to eye. Truth is, it is the farthest thing from a "gift" of mine, despite what Nancy and the team of Dr.s we met at Crouse believe. We can't take any credit, His ways are higher than ours and God is the mastermind behind all of the changes that have been so perfectly orchestrated over the last couple years. Like I said before, it's proof that God is working miracles everyday that we can call these people our "friends at Crouse." I look forward to seeing what else unfolds as the legacy of Ella lives on. Glory to God!

Friday, April 18, 2014

Today I am writing about the upcoming Cortland Pregnancy Center dinner. This is a topic that is extremely emotional to me, so emotional that this could have turned out to be an ugly post, but God is good and has/is currently working with me on healing while working through some things. Last Wednesday I woke up, looked outside and saw snow and everything inside of me said "go back to bed." It was my group's turn to bring food for MOPS and the sewing machine repair man was meeting me there with my serger. I decided I better suck it up and go. My dear friend Cheryl Ann was the guest speaker that day, I was very curious what she was going to speak on. I met her at my very first MOPS, it amazed me that her shoes matched her shirt and they were red and black animal print, I remember asking her if she bought them together, she said she had not. She was always dressed so fancy while I may or may not have even brushed my hair, let alone found matching accessories. Her "talk" was about how God's plan for our lives is often very different from our plans, but He has a way of drawing us closer to Him through it all. She started by telling how she and her husband had two children and they were at a rough point in their marriage. She found herself unexpectedly pregnant and unsure of her future. Upon meeting with a new Dr, she was asked when she would want to schedule the termination as her baby would be born with several medical issues. Upset about what she heard and wondering how she could care for a baby around the clock, she left the office and shared with her husband what the Dr said. They united in prayer and decided God was in control and the birth of their perfectly normal and healthy baby girl five years has completed their family and revived their marriage, Glory to God! Cheryl Ann was sure someone in the audience needed to hear that message. Afterwards she came up to me and apologized, saying she knew God wanted her to speak on that topic and knowing I would be in the audience she was torn. She knew not all stories ended the way hers did, I assured her I was not upset at all. As I drove home I realized I was the one who needed to hear that message. It has been a rough week for me, a combination of hormones and the CPC dinner coming up, being pro life is something I am VERY passionate about. Three years ago at the first dinner, a group of ladies were working in the kitchen, most of us were pregnant, very pregnant. I was 39 weeks pregnant with Ella actually and I was unaware of what I was about to experience. All of those ladies are still able to hold and kiss their children, I see most of them on a weekly basis. At this dinner every year I find comfort in knowing that it is one time a year that I will be surrounded by people who are as passionate about all life having purpose as I am. This is a comfort that most people will never and could never understand. I can't express enough how beautiful to me Ella's purpose is. I believe I will forever be contacted by people who ask me if they can refer a friend to me who is a perfect stranger, but who is face to face with lost and they don't know what else they can do besides unite them with someone who has been there. It's a lonely road. A short life here can still have a BIG purpose. I think about how the idea of having a child with special needs is scary and how abortion seems like an easy way out. I also see how Drs are wrong and God is BIG and many stories have a happy ending. I also see women live with regrets of abortion, that moment of weakness brought them to a decision that they forever have to live with. I also know that I could have justified an abortion in everyone if my pregnancies and the world would have encouraged me it was the right choice. My first pregnancy was just one month into sobriety and Drew relapsed several times during my pregnancy. Driving around in the late hours of life night, alone, scared, pregnant, looking for your child's father who could be anywhere is no place anyone should be. An abortion would have been an easy way out. My second pregnancy was a surprise and Drew had recently quit his job to start his own business and had no work in the near future. Two babies and no income is not the ideal for any situation, most people wait for that perfect job or the perfect set of circumstances to bring children into this world. This was opposite of that. My third pregnancy was Ella. If I had listened to the Dr I would have had genetic testing done and I would have had an abortion per their suggestion. Because I refused testing, a choice I have never regretted, I went on with pregnancy excited about where we were in our lives as God was in the forefront, and about bringing one last child into our family. Forty weeks came and went and the Dr scheduled an induction, which I was hoping to miss as I assumed I would go into labor before the date. The date came and I asked Drew to call and say we were not showing up, my Dr was not pleased as she was unaware I was opposed to it to begin with. This is where my lack of communication is a really bad thing. She demanded to speak with me on the phone as she assumed it was something Drew decided against my will. I went into labor the following day and Ella was born after a very short, easy, natural labor and delivery. An induction would have killed her internally as her heart was weak, a mistake I would have a hard time living with. And my last pregnancy began a month after Ella's death. A dear friend just told me her friend had a hard time loving a child born so close after a loss, an abortion could have easily been a justifiable option. Our God is mighty to save and His strength can create so much beauty out of our ugly weaknesses. I may have never voiced this before, but Pregnancy Centers and the free services and counseling they offer is something I am very passionate about. I appreciate all of my friends and family who have stood by my side during my moments of weakness and support me as I support a cause so dear to my heart. Thank you all!

Monday, January 20, 2014

Over the last couple of months I have embarked on a journey.
One that requires letting go of me and holding on to Him. It is something that
I knew I would face some day, but knew I would never be prepared when the time
came. Through the life and legacy of my daughter Ella, it has been revealed to
me that only our Creator knows the ways ofthe world. Time and time again we see how Dr's fail us, teachers fail
us, ideologies fail us, our sinful flesh fails us. But one thing remains and
always will, Truth. When we see people follow the path that is wide, the ways
of this world, that lead to death and destruction, how does one let their loved
ones go? One was with us from Ella's first breath to her last,there when she was stripped of her mother's
ability to hold and love her, while she was starved by the medical
professionals who couldn't understand how we could love such a monster. And yet
One was there. One was there when Ella came home, experienced life to the
fullest while being blanketed by love from her parents and sisters. The world
kept spinning outside while inside our home time stood still as every second
was being imprinted and painted on the fabric of the depths of who we are, and
who she is to us. Throughout these days my children were blooming and blossoming
into not only mature babies, but young ladies who should never have to
experience the harsh lessons this life has to offer. Through it all, the girls
have unknowingly remained beacons to us and to family who wish for a second we
could all view this world through the eyes of a child. One was there. One was
there as we kissed her cold body, and held it close as we wondered how and if
we could ever part. As the time passed by it became clear Ella's sister were no
longer comfortable and accepting that this was ok, their sister was no longer
able to be embraced, time was moving on without her. As the days and weeks go
by, it is true, people go on with their lives. People stop asking and start
assuming the need is gone. I was foolish to believe that this time would never
come, but I guess it is all part of death. I have pondered the idea of letting
my thoughts on Ella through the blog be a thing of the past, and I was at peace
with that. But today I felt inspired to write, so I am thankful that I can share
my innermost conflicts as I am gratefully rejoicing that all the while, One was there.

Monday, November 25, 2013

It has been two years since you have come and goneBut the legacy of your life will forever carry onYou taught me so much through joy, trials and tearsWith you as our torch, you have burned all of my fearsWithout you I do not know who I would be todayBut I am pleased to know that there is no other wayYou have shown me a side of God I never knew beforeAnd have left me mesmerized, thirsting for moreTo this world you were the least, but to us your offering was grandWe had no choice but to submerge in your depth to understandYou brought a peace upon us that was delicate and pureWith all that you have given this world, your heavenly crowns are many, I am sureI patiently await to be reunited and in the presence of your glory againI am honored to have been able to carry you and to have named you, Ella QuinnIt has been two years ago today that Ella left our arms. I can hardly believe it's true. I remember the way she smelled so vividly, like all newborns, she smelled like Heaven. But her scent was so strong, and in the hours after she passed I just kept smelled her head, wanting to take her all in. This was one of the reason we so quickly had to remove all of her things out of our home that day, I just couldn't stand to smell her anymore, it hurt so much. I thought to myself "if I ever smell that distinct smell of Ella again I will probably vomit with emotion." When Alida was born, thankfully her baby smell was different. I always attributed Ella's strong scent to her hair, figuring it held it within it's strands. Then yesterday I was reading a book on birth stories and one of the women in the book talked about how she always believed that the baby scent was actually from the Angels surrounding them while they transitioned into this world. I couldn't help but smile. I had never heard that before, and will choose to believe this to be true. Ella's scent was so strong, there had to have been a host of angels chaperoning her during her three weeks with us! This is just another great way to think of, and remember her.